For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Seeing my mo this week. This year in August I will reach my 4 year mark on Arimidex. I know we can't blame this drug for all of our symptoms, but I have changed so much since diagnosis. Very tired and lots of muscle and bone pain and horrible insomnia and sweating and weight gain. Immune system weak, seems I am sick with something every other week, and memory problems driving me crazy, so i write all sorts of things to do lists. Eating different since January due to kidney stones. Now limiting sodium to 2400 grams a day, and eating low phosphate, lots of veggies and 6 ounces protein a day. Since eating like this I am experiencing terrible stomach pain...might have to cut back on the large amount of veggies. Got my Prolia injection in January to help with my osteoporosis. I know arimidex is a great medication. My mo tells me it's good to have side effects because that means the drug is working. I just want my old 'normal' back, this new normal sucks.
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Pawprint I hear you but I don't know how much is chemopause and how much is ESD. I too now retain fluid/bloat in spite of the small about of diuretic, can't seem to drop weight, muscle aches, at times insomnia. Sweats only when I eat hot peppers and more warm than sweats so I'm not complaining about that. My big pet peeve is now having osteoporosis in spite of exercise, calcium etc. I have 2 more years.
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I just started taking it also (January 20, 2014). It seems each day brings something new. Today its the top of my thigh aching like a toothache. Didn't do anything different so can't explain it, hot flashes and night sweats so bad can't sleep more than 2 hours at a time. To top it off my thyroid is messed up now causing different problems. My temp running about 95.7 every day causing terrible headaches. I can have a low body temp and be sweating my ass off (sorry about the language). Go figure!! this I relate to thyroid in turn I relate to radiation??? who knows its something new every day...... sorry ladies I'm just having a bad day. 😓
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Kathie, it is sure hard to figure all this crap out, but you sure do not need to apologise for stressing out here!
me, having a bad time as I am ending my 5 years....suggestion is to end the med ,,, slowly and not cold turkey like my onc said. Spent the day looking at the the antidepressant pill bottle but do not plan on switching from one med to another!
hang in girl, the best is only ahead, you will make it
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ok, so posted and it did not make it,
Kathie, hang in and you will get through this but do not ever feel that you can not vent on these boards, that is what they are for,
me, dealing with ending the dang pill, not real easy and wish I had gone with my gut and staggered !
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proudto spin,
I'm relatively new to this forum. What do you mean by "staggered"--
Thanks,
Peggy
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Anyone experience light headedness as a side effect? For several weeks now I have experienced random moments of light headedness, usually lasting no more than 10 - 15 seconds. I don't feel like I'm going to pass out, but do want to steady myself on the nearest furniture. Saturday as I was out doing errands, I had another episode, but this one lasted for about an hour, which really worried me. I went to a pharmacy and checked my blood pressure, and it was fine, but I did have an elevated pulse. Eventually it passed. I'm also wondering if the elevated heart rate is what is causing my insomnia. One of the times I woke up Saturday night I felt my pulse, and it was pretty rapid. I called my GP, and saw him this morning, he ordered an echo cardiogram stress test for me to rule out heart problems. I'm calling MO later today to talk to them about this also.
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Peggy, by staggered I mean maybe I should have taken the pill every other day for a week. But have now been off the med for one week, and feeling better, not quite so anxious so guess it will be ok
just a thought to remember for all
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Pat01, I too have a fairly rapid heart beat even though I exercise aerobically 5 days a week for an hour. I too am getting an echo stress test but this is (to my cardiologist) a way of measuring whether my minor aortic valve leak is affecting me in any way.
(Funny story there. My ears ago when I was being certified for scuba diving, the technician was not paying attention to the doctor's orders and gave me the wrong test. that is how the aortic leak was first identified.)
I have this test every ten years as a routine standard of care. I now am interested in the results of this test because I am about to start AIs and I want a baseline before taking them. Also, i still have peripheral neuropathy in my feet so i'm going to alert the technician to carefully watch me during the test. Last thing i need is an injury from falling. I get the test on Valentine's Day this year.
Damn my genes! But what can one do but laugh at fate sometimes and carry on as bravely as one can.
Hugs,
Peggy
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Hi All!
I haven't posted for a while but have been reading pages and pages trying to catch up....
I have been on Anastrozole since last Sept (switch from Tamoxifen after mets) and my side effects started within the first few weeks.
Hip & leg joint pain/aches mostly. Lots of hot flashes. Feet sore upon waking that kind of thing.
After a few months I noticed lots of hair loss (started taking Biotin as suggested on here and that has helped a lot).
I have to say that for the most part the SEs I experienced were off and on have pretty much subsided or gone.
I'm left with insomnia (take my pill in the morning), weird & vivid dreams, and a continuation of tongue tingling/fuzziness (could be a food allergy brought on by chemo so I'll be seeing an allergist).
A week ago I started feeling breast tenderness in my natural breast. Not sure if this is a side effect since I've not read about it and no one else has mentioned it.
It feels like I'm going to get my period (a memory feeling for me since I haven't had one since chemo in Oct 2009).
I saw my GP this week to get the allergist referral and asked him to do a breast exam. He poked under my arm and I'm sore there too (lympth node?) as well as the inside (cleavage area) of my breast. He told me it felt like normal thickening breast tissue possibly brought on by hormone changes from the AI.
I haven't had this feeling in years - not even with recon or reduction surgeries - so I'm wondering if it is the AI.
Anyone else having this feeling?
As for weight gain - mine started during chemo and I haven't been able to take it off. I did lose a bit last May when the PS harvested some fat for my fat grafting recon surgery. LOL!
At the end of this month I'll be having another fat grafting surgery - again fat will be harvested from my lower abdomen - and this time the PS will do a tummy tuck since this will be my LAST recon surgery. Hopefully that will take care of the pouch and spur me on to more serious work outs and weight management.
My GP gave me a home test (FIT) instead of sending me for a colonoscopy. It's a kind of pretest and after the lab results came back he said that I didn't need to go for a colonoscopy at this time and unless I started having symptoms I wouldn't have to at all. I'm over 50 but there is no family history.
I'm happy that is one less test for me!
Marie
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MarieK,
My understanding, and I could be wrong, is that AIs reduce breast density, not thicken them. At least that is what has happened to my healthy breast. I'd suggest that you request a diagnostic mammogram and an US. I would also insist on a colonoscopy since you are over 50. At the least is serves as a baseline. Not that this would happen to you, but I know two men who had colon cancer diagnosed at their first ones. Age 50 was stage 3 and age 53 eventually metastasized. No symptoms or family history for either. Colon cancer is not related to breast cancer, but still, our bodies have show a tendency to not be able to fight it off.
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Mariak I just saw my MO yesterday for the same thing. They are scheduling me for a ultrasound this week because I'm so sore theres no way I could have a mammogram my breast is really swollen also due to inflammation. Not sure what's causing it but they suspect fluid build up due to surgery last June. They also suspect one of my ovaries have grown back based on my estrogen levels being so high. I began taking arimidex about a month ago. My question to other ladies have they ever experienced this or heard of it. I had hysterectomy 3 years ago due to endometriosis. My blood work came back showing I'm not completely into menopause, I just turned 51 in December. My cancer is 100% ER+. I can't believe I'm not in complete menopause based on the weight gain this year, hot flashes, and mood swings. If they get worse I don't believe I can handle it. It seems every visit brings something new. Good luck to you and I pray all goes well and you get the answers to all your questions😊
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MarieK breast tenderness is an SE of Anastrozole but like doxie said it should be making the tissue less dense not more. I would demand a diagnostic mammo. Any changes in your breast, especially since you now have history should be checked out.
complete listing of Anastrozole SE (be sure to scroll down) linky
Kathie100 I now many women who are perimenopause for years. They get terrible hot flashes, gain weight etc. I have one friend who's hot flashes were so bad all through her 40's that she claims she was single handedly responsible for global warming. Ovaries growing back. Now that's a new one but reading Dr. Google it can happen:
Though very rare, it may happen on situations when:
1) You have endometriosis
2) If the doctor accidental left cells behind. Ovarian tissue,
abscesses could have bursted, leakage could have been released during
surgery, leaving cells to reform spreading potentially cells to have the
ovary to grow back.
This condition is known as Ovarian remnant syndrome.0 -
Spoke with my MO last night - he doesn't think my lightheadedness is coming from the Anastrozole, but said to not take it for 3 weeks and see if if my lightheadedness goes away. So that's what I'm going to do! And I really hope it goes away, kind of scary when it lasts for longer than a few seconds.
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Pat01, I woke up one morning in mid-November with light-headedness and found myself staggering into walls, etc. I was out of the country at the time and hurried back to the States. Over the next 6 weeks, I had a brain MRI (normal), bloodwork (normal), and VNG test for inner-ear problems (normal) and mammogram (normal). I had 3 ENT appointments, 3 appointments with two different opthamologists, 3 appointments with my PCP and 1 with a neurologist. No one could pinpoint what was going on. Over the course of that time, I also developed tremors. The neurologist ruled out ALS, MS and Parkinson's. My MO didn't think my AI, Aromasin, was causing it. My PCP ruled out thyroid problems but took me off one anti-depressant and weaned me onto a new one. Whether or not that helped, 3 months later, most of the symptoms have subsided, although my balance still isn't what it was before. Very, very unsettling when our bodies go berserk, and no one can figure out why!
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P.S., One of the opthamologists asked me if I had had radiation. She said she had heard of strange ear/eye problems developing even years later in people who had had radiation (which I had had 2 years ago.) She also told me, before all my tests, that it was possible they never would find the cause. Smart woman.
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Having had BC puts you at a higher risk for colon cancer too, have the colonoscopy. Because of BC, I have one every 5 years and I am glad for them; they really are not bad at all, and if something was found they could snip it out before it becomes a problem. If colon cancer has spread it is very difficult, and horrible, to treat.
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Wave, I had such a similar experience, where I woke up with dizziness. Went through a ton of tests, folks started talking brain surgery! Went for a second opinion, he said go home. You only had one spell and none since and likely it was a virus of some sort and we will never know the cause.!
Been over a year and no dizzy head since. Think we all get stressed and the doctors just love to run tests on us.
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Probably not the same, but I get bouts of benign paroxymal positional vertigo--from rolling over certain ways - little particles in your ear drums loosen and you get dizzy spells. When that happens doing things like standing too quickly can make you very dizzy, the room spins. Once I passed out from it. There is a 'move' the dr can do to reposition the particles, it can be done at home as well. I get it every few months. Tho Ive noticed that by not sleeping on my stomach for the last 6 months, its been better.
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Ruth I think the colon cancer connection is more if related to BRCA or family history. ACS site states that if you have had more than one cancer like breast cancer AND another cancer like ovarian then you are at higher risk for colon cancer. I have had no other cancer. My maternal grandmother died of colon cancer. My gastroenterologist said he found nothing and the grandmother connection isn't relevant. It's only if my mom or dad had it. But of course you should discuss with your MD.
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Lago thanks for the reply. My MO thought maybe they hadn't actually taken the ovaries out. She said my blood test for estrogen and some follicle hormone blah blah blah test shows I have an ovary. I have scheduled a follow-up with gyno for next week. It blows my mind what comes up after a breast cancer diagnosis besides the endometriosis I have always been extremely healthy and active.
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Thanks for the replies! I've got an appt with my GP for tomorrow but I've called and left a message for my MO to see if I can get in before my Mar 4 follow up visit.
If not I'll go see the GP and ask for a breast ultrasound.
Today the tenderness is more in the armpit and I noticed that my arm has been falling asleep (hand completely numb) when I lie on my right side. I don't remember that being an issue before.
Mind you the tenderness in the armpit could be because I've been poking myself a LOT lately trying to figure out exactly where the tenderness is. LOL!
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Marie - hopefully it turns out to be nothing but a SE but let us know..
My breast has been sore recently and especially on the side and I have a slight rash and itch ... also my scar is getting reddish.. skin changes still happening from rads? or SE from the meds? I have an appointment with my RO and one with my MO in April - if it gets worse I'll call the MO ...
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Poking too much could actually be the problem, best to leave it alone & get it checked out.
Lago, I have a cousin who died of colon cancer & some other intestinal related cancers in the family, so maybe that's where the 5 year recommendation came in, but I still would definitely get a baseline at 50 and then follow your doctor's recommended time line after that.
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Maybe Ruth or maybe he did remove a polyp from you that was questionable. I also had an uncle (son of the grandmother) that had stomach cancer but that was decades ago and he's cured. Mine was a few months after I turned 50 and finished chemo.
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My dad (I'm adopted) had a colonoscopy. They found a few polyps and snipped them out. No chemo. They missed a cell or two, took up residence in his liver. He died way too early. Do the damn test anyway.
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No lago, I have, to quote the doctor, 'a beautiful colon' (is that what they mean by inner beauty?
). I just think my doctor is very cautious and would rather I be safe than sorry. 0 -
I had early-stage colon cancer 17 years ago and had a quarter of my colon removed. Both my mother and two of her sisters also had colon cancer, and a first cousin on that side of the family died of ovarian cancer and another cousin on that side died of BC. When I was diagnosed with BC, they sent me to a geneticist, who did much research into my family history and even got lab reports from my deceased family members. She suspected Lynch syndrome, which runs in families and predisposes you to colon cancer. I was tested but did NOT have Lynch, but my MO actually talked to Dr Lynch, and he believes there is a connection, generally, between colon and breast cancer.
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BosumBlues my stiffness started 3 months after starting the drug. Just like you. In the morning and after sitting for at least an hour. But after a year it got much better. Now I have some of the stiffness in the morning (feet and toes) but it goes away in 30 seconds.
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BosumBlues - I, too, have the foot stiffness in the morning and after being immobile. While the rest of my original SEs have faded away this one has stuck around. Expect the best but plan for the worst. Each and every one of us reacts differently to this drug. Some sail through with no SEs whatsoever (they're not on this site). Some have SEs but just deal with it and still are not on this site. Some have minor issues, some have major issues, some have debilitating issues. Some SEs start small and get worse, some start bad and resolve on their own. Some just stick around as minor annoyances that we put up with because we feel staying the course is worth the discomfort. And remember there are other AIs that your MO can have you try if Arimidex does cause you too much distress. You can do this
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